A look back on my journey

Henry’s journey has been fantastic.  He has gone from being profoundly deaf, locked in his own world, unable to communicate and participate fully in our life, to a very happy, outgoing and confident little boy.  He can hear the word “biscuit” whispered in the other room, and will throw a huge tantrum, demanding his “mama” or “dada” listen to his needs.  This ends in two ways, a biscuit and a “thank you” from our little boy.  Or a distraction by us with the promise of something equally good- a book, bike ride or one of his cars (all of which he will eagerly say “yes” to, nodding his head up and down and understanding completely what we are offering).  What wonderful progress he has made.

But, how has my journey tracked?  I was a reluctant participant in all of this.  You know the quote “I took the road less travelled”.  That wasn’t my choice.  I wanted the road most travelled.  I wanted a normal, healthy baby.  I didn’t want a baby who was profoundly deaf.  Sure, I am ‘technical’, I studied engineering at university.  But I didn’t want to learn about audiology.  I was quite happy to never know the difference between conductive hearing loss and  sensorineural hearing loss.   Yes, I enjoy studying, but do I have to learn Auditory Verbal Therapy? 

I have been put on a path that I wasn’t prepared for.  That I didn’t choose.  But you know what?  I am a mother, I am Henry’s mother and that means embracing every aspect of that.  I am privileged to be the mother of two gorgeous children, and I love all that comes with it.  Parts of the journey have been hard.  Holding Henry in my arms as they knocked him out to commence a seven hour surgery to implant his cochlear implants- what an enormous responsibility; as he looked up at me with his trusting eyes, me worrying if we were doing the right thing, but sure that we had made the best decision we could.  I feel so special to be part of Henry’s journey.  It has been Henry’s journey towards hearing and talking, but it has also been my journey.  I have learnt so much- the technical stuff is easy, I can learn that in a night.  But the important stuff, you have to experience it, to live through it.  I have developed a greater understanding of love, acceptance, family, empathy and resilience.  Not just through my own journey, but through other people I have been lucky enough to meet and talk to on the way.

And you know what, I feel proud of how I got through this.  And I really do feel we are ‘through it’.  Henry may not have ‘normal’ speech and language yet, but I have no doubt that he is well on the way. I have no concerns whatsoever about his language development now.  Sure there will be things to sort through in the future, but just as part of normal everyday life.

My gorgeous Henry

I am constantly reminded that every day parents are faced with the discovery that their child has hearing loss.  And it’s a traumatic and troubling time, it definitely is.  Filled with uncertainty and unknowing.  But if I can offer any comfort, it is this:  I have kept my blog for ten months now, on our journey towards getting Henry access to sound and hoping that he would one day speak.  Although the odds are good, you never know... And so I recorded our journey, the ups and downs, the exciting moments, the difficulties.  But less than one year on, I find I have little to write about.  And I am starting to feel, it’s no big deal.  And I know it is, of course.  No parent wants to see their child faced with the obstacles a hearing-impaired child will face.  And of course, there is and always will be, difficult times.  But to parents who have recently been re-routed to my path, the one where you have one calendar just filled with audiology, therapy and doctors appointments, take heart.  If it’s only hearing loss (and I do know that for so many, it is so much more), it’s one year of intensity, and then you will just get on with your lives.  On a slightly different landscape.  But it’s do-able.

For myself, I find that I have been given a new filter to life.  I can focus much more clearly on what is important and what is peripheral.  People.  Things.  Experiences.  Life.  Would I choose this path?  No, I wouldn’t choose to have a deaf child.  But you know what, I am enjoying the journey.  It’s different.  It’s not what I planned.  But it’s rewarding.  It’s special and filled with love.  And we are happy.

Baby Gym

It has been a while since I have written, and I think that reflects the fact that my life has moved away from being a mum of two children, one of whom is deaf, to just being a mum.  Who knew ‘normal’ was so wonderful!   

I was reflecting on this yesterday when I took Henry to his weekly Baby-Gym class.  When we started in the class, Henry was the only child who couldn’t walk (the class is for 18mon- 24mon, and Henry started walking only at 18months).  So activities like running around a circle were difficult, despite Henry’s super-speed crawl!  Henry had very limited vocab, so instructions from the teacher like “okay, everyone come and get two shakers from the box, one for you and one for mummy”, meant little to him, even if he had been able to hear the teacher properly above the background music and other children!  However I wasn’t too worried about what the other kids were doing, and what Henry couldn’t do, I was doing the classes to teach Henry new things and expose him to different activities, and as long as he was progressing in his own way, and having fun, then that was all that mattered.  Each week I patiently repeat each instruction from the teacher to Henry to ensure he has the language to go with each activity we are doing.  And over the weeks I have seen his confidence blossom, in himself, his understanding of what is happening and in his abilities.  Before we started the class I was worried that his CIs were going to keep falling off at inopportune times (like when he is demonstrating swinging on the bars to the class) – I didn’t want everyone to see him as the boy that needed these hearing aids that kept falling off- I just wanted Henry to be another little toddler trying to balance on the beam.  I needn’t have worried- his headbands keep his CIs on so perfectly, they have only come off once, when he was being shown how to do a backward roll and very awkwardly got stuck halfway!

Yesterday in class, just over two months after we started, he was running around with the rest of the kids, fighting over the balls and calling out ‘mama’ when he couldn’t see where I was.  At one point the teacher asked Henry if she could help him do a handstand.  He nodded and said “yes”, it was so cute.  I know he didn’t really understand what she was asking, but he understood enough that it was question and Henry had to answer and that then he was going to do something with her.

Henry is an individual, with his own strengths and weaknesses, but it is so nice to see him with other children his age and see that he is not missing out on anything, he can do everything they can do, it’s wonderful to see.

39 words

Age = 18 months.

Hearing Age = 7 months.

Vocab = 39 words.

For our record and reference:

• apple
• around
• baby
• ball
• bath
• bike
• bird
• book
• bowl
• bye
• car
• cat
• cow
• cut
• dada
• digger
• dog
• down
• duck
• fish
• grandma
• grandpa
• helicopter (“copter”)
• hop up
• hot
• mama
• popper (what we call a juice box)
• pull
• push
• shoe
• sleep
• sock
• ta (thank you)
•  tractor
•  truck
• yes
• uh-oh
• up
• yum

The list reveals a little about Henry’s life too!  He eats and sleeps.  He reads books about animals.  He pushes and pulls cars and trucks.  And Mama drinks hot coffee!!

Imogen Teaching Henry

Imogen is such a good big sister, always teaching Henry new words.

  Here she is commentating a movie to him.  Notice how half way through she gets him to say "people", the first time he has said that!

And here she is reading a photo book to Henry.

Quiet

From the moment Henry wakes up in the morning, til when he goes to bed at night, I talk;  I commentate, I label, I read, I play games, I sing, I do not stop talking.  I know that to have the best chance of developing speech and language, Henry needs to hear the language- often.

But every afternoon we go to the pool for an hour.  I take off his CIs when we arrive at the pool (which can’t get wet) and stop talking and it’s such a relief!  I give myself, and Henry, a break, and just enjoy the water, the quiet.  Although, my quiet is not the same as Henry’s quiet.

Of course I wish with all my heart that Henry could hear at the pool, but I know how lucky we are that he can hear the majority of the time and it always makes me appreciate that a little bit more when I experience how difficult it is communicating with him without sound.  People say to me, oh kids don’t need to hear at the pool, they just swim!  But Henry can’t swim and I’m finding it quite difficult to teach him without the benefit of words.  I sign ‘kick’ to him, and he signs it back, so proud, thinking that that’s the game- like giving high five, look, I can copy you.  But I don’t want him to sign it, I want him to do it!!!  Watching Imogen’s swim lesson yesterday, the teacher didn’t stop talking, kick your legs, face in the water, blow bubbles; all things I need to teach Henry somehow.  But, you know, it’s just a small hurdle.  Yes, it makes it a little bit harder, but some kids hate the water, every child needs to be taught in their own way, in the way that suits them best. 

And at the moment, I am not too focussed on the swimming thing.  Right now I am just letting Henry enjoy the water, and allowing both of us to enjoy the break from my voice.

School

My daughter will start school soon, and we are busy considering the different options we have for her.  As we are in Dubai, we have to consider the curriculum we put her in (International, British or American) as well as a host of other factors.  She is an incredibly bright, confident little thing and I know she will thrive in most environments.

About six months ago I had a discussion with Henry’s therapist about pre-school options for him.  Australia has some excellent pre-schools aimed specifically for deaf children learning to listen and speak and I wondered if we should start getting him enrolled in one of these.  Melissa advised me that most likely Henry would be able to go to a ‘normal’ pre-school.  At this point Henry had not yet been implanted, seemed worlds apart from hearing children, and while I found this encouraging, I wasn’t totally convinced.

However now, six months on, Henry is progressing beautifully with his listening and speech and I have no doubt that he, like his sister, will be able to attend and flourish, at any school we choose for him.  Henry’s hearing impairment, while still an important factor in any decision we make, not only about him, but about our family, is just one of the many issues that we consider.  

This week I hosted playgroup, attended by a diverse range of children; different nationalities, religions, backgrounds, parents, abilities, strengths, weaknesses.  Every child comes to us with their own personality, and is shaped by their experiences.  Amongst all these children, Henry was like every other child; unique.  His deafness is part of who he is, but it doesn’t define him.

How cool is this?!

Henry gets to be just like any other child, enjoying playing music with his sister.

How great are Cochlear Implants!!!

We are eternally greatful for the opportunities Henry has.

hearinghenry business is up and running!

Our hearinghenry business, selling products to keep hearing devices in babies and toddlers is up and running!
We have four great colours of both the hats and headbands and deliver worldwide!  We have:
Pilot hats - to keep hearing aids in, and
Headbands - to keep cochlear implants on.
Please check out our website: www.hearinghenry.com

Would love to hear your feedback!!

Twelve and Six Months On

Twelve months ago, Henry was five months old.  After numerous appointments and tests and re-tests, he had been diagnosed in Dubai (where we were living) with moderate hearing loss, fitted with hearing aids and sent on our way.  From my online research I understood that Henry would benefit from some sort of early intervention, but I thought this was more of a bonus, not the necessity it actually is.  I made an appointment at the Royal Institute for Deaf and Blind Children (RIDBC) in Sydney, and I feel that this was the turning point to getting us on the right track with Henry.  Melissa, who would become our therapist, took the time to explain hearing loss, early intervention, and the sort of services that were available in Australia.  Despite my lack of knowledge of all things hearing related, I had a mother’s instinct that Henry still wasn’t hearing, despite wearing his hearing aids every waking moment.  With Melissa’s support, we pursued this over the next few months.  The assessments and tests we did in Australia over the next few months, combined with my observations and Henry’s lack of progress hearing-wise, resulted in a clear diagnoses in December of profound deafness.  These six months between our first trip to Australia, and Henry’s surgery in January, were fraught with worry, confusion, uncertainty, sadness and stress.

Our next turning point was 4^th February 2011 when Henry was switched on.  In the last six months, Henry has moved ahead in leaps and bounds.  It seems like he was just waiting for a chance to hear and access the rest of the world.  Our quiet, serious little baby has been transformed into an engaging, curious, very intelligent, still sometimes serious, but also very noisy, little boy.  Before the surgery we were so worried about him getting CIs, how much work they would be to manage and maintain.  But most days we barely notice he has them.  I put them on first thing in the morning, and then I just have two normal, hearing children who play together and fight together and do everything that any other child does.  I am eternally grateful that Henry has been able to enter our hearing world, and especially at such a young age.

This week Henry had his six month post-implantation assessment, and even though we knew he was doing well, it was so nice receive such positive feedback from his audiologist and therapists and to compete the same assessments he did six months ago, but this time with completely different results.  In one assessment on speech perception and language, he got a score of 1/44 last time.   This time he got 36/44, which is an awesome result.  I am so proud of how far my little boy has come and so grateful to everyone involved in our progress, particularly RIDBC and SCIC.

I Need You

Just jotted down some thoughts on my responsibility as a parent and what Henry needs from me.

I Need You

I need you to teach me, with patience and understanding.

I need you to help me, nurture my strengths and strengthen my weaknesses.

I need you to challenge me, new ideas, new problems, new insights.

I need you to set boundaries for me, allow me to explore safely, and to know my limits.

I need you to set examples for me, allow me to live by the model you demonstrate to me.

I need you to love me, unconditionally, without question.

When I succeed, I need you to celebrate my accomplishments.

But when I cannot do the things that other children can do, this is when I need you the most.

I need you to be proud of me and love me, as I am, who I am, to love me in spite of, because of, my differences.  I need you to be proud of me, so that I can be proud of myself.

Imogen

Imogen has adopted the language of a mini- Auditory Verbal Therapist as she models her behaviour on mine, as always.

She points out sounds: ‘Henry, did you hear that? (exaggerated pause, pointing to her ear) Did you hear that, that was a cow”

She repeats herself:  ‘Henry, do you want the truck, this is the truck, do you want the truck?’

She commentates life:  ‘Henry, look, Grandmas is cooking, can you see Grandma cooking?’

Her language has even become more basic as she adopts my simplified versions of everyday words:  She says: “ba, ba, ba, balloon” and “ta” instead of thank you.

And she matches objects with sounds, “Look Henry, that’s a bird, the bird says, tweet, tweet, tweet, bird, Henry, that’s a bird”. 

All without even thinking.  It’s amazing how as the language has become second nature to me, so too has it to her. 

Sometimes I find it frustrating that I can’t sit and read to Henry quietly without Imogen chatting away.  Talk about minimising background noise, not an option when Imogen is around!  But having her around also provides so many positive benefits for Henry. And she is the best model for Henry.  He watches her every move and copies everything she does, so it’s a very powerful thing to have her modelling language for him.  I have to remember not to expect too much of her, after all, she is only three.  So if she wants to crawl under the table and pretend to be a cat, which Henry can imitate perfectly, well, that’s okay.  After all, they are children first  The most rewarding thing is to see them playing together, not as an advanced three year old and hearing impaired one year old, but as brother and sister, my two precious munchkins.

Some photos of the kids mucking around...

Henry and Immi being silly in milk crates

Henry teaching Immi tricks this time- car in the mouth for photos!

Glimpses

In the morning when Henry gets up, I slip his headband with his CIs onto his head and at that moment he is transformed into a hearing baby.  And until I remove it as he hops into the bath that night, there is really no difference to our daily life with him, we are just like any other family.  Sure,  I try really hard to expose him to as much quality language as possible, I talk and talk, and I point out sounds and commentate our life, but for the most part I have just gotten on with life, busy juggling two small children and my new business (hearinghenry).

However, sometimes I come across a new aspect of Henry’s hearing loss, and it causes me to stumble for a moment.  This week Henry has (finally!) moved into his own room and so I went to buy a baby monitor, so I would still be able to hear him through the night.  As the well meaning sales assistant explained the features of each one, she tried to sell me on the ‘parent talk’ feature – ‘look, you can just push this button and talk to your baby if they are distressed’.  I quickly assured her I didn’t need that (as of course Henry wouldn’t be able to hear me) and tried to move on.  “But you can sing to your baby”, she continued, “you could sing songs and not even have to go in there”. 

And at that moment, I felt raw and exposed again.  I felt a wave of grief sweep over me as I thought of Henry in his cot at night, in a world of complete silence, unable to even hear his own cries.   I felt the pain of Henry’s deafness.  My layers of positivity, strength and composure completely stripped away for that moment.

But every time this happens, I add a new layer.  I become stronger on the outside, yet below, I have a new depth of compassion and feeling.

I can’t pray that Henry doesn’t have difficult times as he grows up, because that is inevitable.  But I do pray that he can use his adversity to develop strength, empathy and love.  

"Up, Mama"

I had the most amazing moment today.  I was trying to get Henry to go down for his morning sleep, but he kept crying and crying in his cot.  I walked into the room and he looked up at me and said “Up, Mama”.  So, so beautiful!!!!!!!!  It’s the first time he has put two words together.  In fact, he has only been saying “up” (when he wants to be picked up) and “mama” (sounds more like ‘baba’) for the past week and now he put them together!  I am so overwhelmed.  My little boy who has been hearing for just over four months, is talking!  We are hearing henry!!! 

(Ironically Henry could not hear himself at the time as he doesn’t have his CIs on when he goes down for his sleep).

Will is in Dubai at the moment, so I just told him on the phone.  His message back sums up beautifully how I feel, so I will quote him here:

I can’t explain how happy and excited and amazed and thankful and tearful I feel about what henry was saying.  I’m lost for words...........................awesome!